worththewords

Thank you.

It's exciting and stressful at the same time. We've been renting for a couple of years and would like to at least put our money towards something. Right now is a good time to buy in Florida because it is "off season" for us. However, we have to be careful, if we buy and there is a storm brewing in the ocean we won't be able to get insurance until it's gone. So we have to find something that we could close on quickly while the tropics are behaving.

We are looking at getting married in the Fall of '07. We have to get our health insurance situation figured out. Right now my fiance and I are both under our parent's plan since we are both full-time college students. However, he graduates May of '07 and will be establishing a plan for us then.

I'm trying to hibernate as much as possible in the A/C here in Florida.

I went house hunting yesterday and it was at least 94 and as sunny as possible. Of course I needed to walk around the perimeter of the house to inspect everything but then the realtor had to stop in the driveway and talk for 20 minutes. I thought I was going to drop at any moment and was hoping that the grass was soft because I couldn't get a word in at all to wrap up the conversation!

I managed to survive but it definitely zaps the energy out of you. I went to lunch with my mom and fiance afterwards and had to drink 3 glasses of water to get myself feeling back to normal - whatever that is.

I received corina's cards yesterday! I'll let everyone know when Michelle has posted pictures of them as well as pictures of Nina's fashionable medic alert bracelets are up.

Let me just say that the detail that went into the cards is remarkable. It was very hard to capture and I hope the pictures do them justice. They are so beautifully made.

I'll let everyone know when they are up and when more items come in!

Hope everyone is enjoying their weekend and feeling well.

Tachycardia

I think I've adjusted to being constantly fatigued but the tachycarda is the worst for me.

I'm sorry to hear you are going through such a rough time. I hope your doctors figure out something for you.

Someone suggested Netflix as something to do when we are feeling POTsy or down. I belong to Netflix and I highly suggest it. They have way more selections than the big chains like Blockbuster. I really like independent film and they have always seemed to have what I've wanted.

Could you talk with your therapist over the phone? I've done that in the past since driving isn't always a good idea for me and well, with POTS you never know how you are going to feel. I hate cancelling appointments.

I'm keeping my eye on my mailbox for everyone's donatons.

I will send a PM to anyone who sends something in to let them know I received their donation!

I just finished sending photos of Nina's bracelets to Michelle. Hopefully you'll get a sneak peek of them this weekend.

Check out the website again!

It's been updated with two of Dawg Tired's autographed books.

I received Nina's bracelets today and will be taking pictures of them tonight. I'll let everyone know when they are posted.

Mold isn't good for anyone, even worse if you have allergies. I don't think it would cause POTS, however, it may contribute to you feeling more symptomatic.

You can preview the items that will be up for bid in the eBay auction here:

http://www.dinet.org/auction.htm

I have polycycstic ovarian syndrome. My doctor's have never related it to POTS though. I have a thyroid issue too so my doctor's tend to link the polycycstic ovarian syndrome with that.

If you find any link, I'd definitely be interested in reading it.

Is the DINET stuff going to have their own section on eBay???? I'm not sure how all this works...

Jacquie,

Michelle might be able to answer this better for you. But I'm fairly certain there will be a link that everyone can be provided with to view everything DINET will have on eBay.

Dizzygirl, I'll keep an eye out for a package from you.

Alexia

Today I received the first two packages for the auction. Thank you wareagle and Dawn. They have contributed some very nice jewelry and quilts! Just wait until you see them!

The auction will be held the first week of July on eBay so don?t forget to send in your contributions and get ready to bid!!

Alexia

Thanks for sharing your experience.

I see Dr. Grubb in November and I'm looking forward to it. I have a 10am appointment so hopefully I won't have to wait too long.

The power point presentation sounds interesting. He should mass produce something like that so we could show it to people who still don't get our condition.

This is very interesting. Please keep us posted on your progress. Good luck.

What type of doctor did you see that determined this? Is this supposed to help POTS? Any further info..I'm curious!

Which study is this? I know you were considering two of them.

Good luck to you and thank you for taking part! Who knows how many will benefit from it!

Very cool! I plan on checking it out at noon tomorrow.

I live in Florida and you would think I would have a great master plan of how to beat the heat by now. But honestly, I think my blood has thinned to an extent because the heat only really bothers me in the summer. The only thing I've learned to do is HIBERNATE! I increase my already increased fluids but when it's 90+ and humid.. what else can you do?

I have my first appointment with him in November. Would you mind sharing your experience from your appointment with us? I'm real curious to hear everyone's thoughts.

What time is your appointment? I've heard you have to wait a long time. Although I'm sure it is is worth the wait!

I was put on Verapmil after having a double cardiac ablation because my drs initially thought I had IST. It didn't help me at all. When I went to Mayo and was diagnosed I was told that calcium channel blockers do not help POTS at all. I went off of it and I couldn't even tell a difference. It was as if I had been taking a placebo the entire time.

I've always wondered about this. Although my TTT showed that I did indeed have POTS. Can LYME mimic that? What type of doctor would you see to get tested?

I have a lot of those symptoms listed although I know most of them overlap with dysautonomia. I've lived in Florida a good part of my life. However, I also lived in PA when I was growing up and I definitely played in the woods a lot.

Any more info on what type of doctor to see, what type of testing to ask for, etc. would be appreciated.

I think I know what you are talking about. A little hard to explain though. I've had two occasions that I can think of where I was stressed/shocked and got this weird feeling then severe palpitations/shaking. I felt like I could have just passed right out. Honestly, I just think it was adrenaline rushes/surging.

Maybe someone else will have more insight.

Hello,

Welcome!

I don't know anything about Thyroxine or the other meds you mentioned. However, I also had an underactive thyroid. (I was originally overactive with toxic nodules - had radioactive iodine treatment to burn out my thyroid/nodules - thus causing it to be underactive). I now have to take Synthroid for life. I imagine it might be similiar.

Everytime I've had to increase my dose, I've suffered with a lot of palpitations. I was told ahead of time this would be a side effect. Obviously I have to have this medicine so it's something I just have to adjust to. Usually after two weeks, the palpitations go away and it seems like my body adjusts.

I asked my endocrinologist about alternative medications because I hate dealing with the palpitations and feeling so terrible. He understands what a strain it puts on my body when I change my doses so only does it when it is severely needed. He did not recommend alternative meds because he said the potency was not the same and then went on to explain how important it is to have my thyroid regulated - especially with dysautonomia.

Not sure if this helps any, but this was my experience.

Alexia

It seems like when my limbs aren't snap, crackling, and popping, they are falling asleep on me. I wake up in the morning with a hand or arm completely asleep. Usually it's because I slept on it funny. Initially when this happened it freaked me out and I thought I was having a stroke. I was sitting somewhat indian style for a short period of time and when I stood up I almost fell over. One of my legs felt completely asleep.

However, it seems like when I lay completely straight, I get stiff after awhile or when I sit in the same position for too long that is what causes me to turn into a bowl of rice krispy cereal. I've developed my morning snap, crackle, pop routine along with waking up whatever limp went to sleep on me.

Anyone else have this problem?

This happens to me a lot and often times I've asked my fiance to stop moving when he hadn't been moving at all. It's really strange to explain but it usually happens right as I'm trying to drift off into sleep. It's such a weird feeling I will try to fight sleep but I usually just give in and wait for it to be over and me to fall asleep. Another weird POTSy thing.

If you move this topic to PMs for details, please post the final decision. I don't live in NYC but I travel there often and if I was going to be there at the same time I'd love to come meet everyone.